Monday, October 27, 2014

New Jersey Dad: "Reality Of Autism Is Often Very Grim"

I chose the name of my email account "" because, from my perspective, the harsh realities of autism disorders are usually ignored or worse,  intentionally misrepresented, by the mainstream media, autism awareness organizations, some high functioning autism "self"advocates and even some parents and autism professionals.  An online friend of mine who shares similar perspectives, Roger Kulp, shared an article on my Facebook timeline yesterday which surprised me because it was a commentary published in the New Jersey Courier-Post which presented a realistic view of some of the harsher realities faced by some with autism disorders and their families.

James Terminiello is the father of a 26 year old autistic son.  His commentary, Reality of autism is often very grim,  describes in detail many of the harsher realities faced by those with autism disorders and their families and other caregivers. Terminiello pulls no punches and will quite possibly incur the wrath of those who wish to paint autism as a pretty picture of alternative thinking and unusual genius:

"In  the world of autism, the autistic who pens short stories, designs bicycles, plays a mean piano or builds his own advocacy website gets the lion's share of media attention. And it has gotten out of hand. As a result, in the public eye, what was once regarded as a future-annihilating, invincible condition has become just a quirky little detour on the merry road to success.

Very nice and very, very untrue."

I  will not re-post  Terminiello's entire commentary here but I strongly encourage anyone who wants a realistic view of autism disorder realities to read it on the Courier-Post. And the next time you read a feel good story about the wonders and accomplishments of the more fortunate with autism remember there are many, many more whose lives, and the lives of their families and caregivers are actually impaired, restricted and shortened by autism disorders.


Anonymous said...

What if the story said that the child was diagnosed with severe autism and intellectual delay and received intensive ABA therapy and is now a success. Shouldn't this story be told? It will push parents to demand their goverment implement intensive ABA and will eliminate severe adult autism.

Unknown said...

Anonymous 3:48 pm:

The NJ father who authored the referenced article did not say that success stories should not be published. The point of the article is that there is very little balance in reports of autism ... that success stories dominate news coverage while little is said about the grim realities facing those with severe or low functioning autism, their families or caregivers.

Anonymous said...

I am thoroughly convinced that the outside world will never want to read about the realities of severe autism. Even looking at the world of blogging the only good autism blogs that detail the reality we live every day are your blog, Autism Daddy and Alisa Rock's Autism Experience.

It appears the "self diagnosed" individuals and mommies bragging about their high functioning kids have slowly but surely brainwashed the public into believing this is what autism is for everyone. These are the people who then write books and spread the message of how "cool" autism is even further. I honestly wish they could walk a day in our shoes. They are ignorant and arrogant people who will never care about any other end of the spectrum but their own.

cam said...

This is exactly our lives Harold. Also this is all I see as our future. There is hope and there is reality. You try to have one but you accept the other begrudgingly. This guy hit it square on the head. Cam.

cam said...

This is exactly our lives Harold. Also this is all I see as our future. There is hope and there is reality. You try to have one but you accept the other begrudgingly. This guy hit it square on the head. Cam.

Roger Kulp said...

If my recent experience with trying to get on the IACC is any indication,going from being low functioning to being able to function independently on a basic level is not enough to impress people,so it wouldn't be newsworthy either.You need to prove you have done superhuman things.

Roger Kulp said...

There was a post today in our Cerebral Folate Deficiency Facebook group that reminded me just how lucky those of us who have this condition are,to have a form of autism caused by a metabolic imbalance that can be treated with medication and diet.I still have a very hard time from my,now confirmed,mitochondrial disease,but it could be so much worse.I have just gone through a prolonged period of mitochondrial sickness,almost as bad as the one I had in 2008,that I both nearly died from,and caused one of the worst regressions of my life.But I didn't regress this time thanks to those magic little green pills and a GFCF diet.

I could complain that it took so long to find a cause and treatment for me,but at least it came so I could lead an independent life.Articles like this are a real reminder most are not as lucky as those of us diagnosed wirh CFD are.

Mommie that Gets It said...

Another great post! I believe your blog deserves much more recognition than "Autism Daddy"! I do not follow that blog but I have seen it. I prefer to continue to recommend yours and I hit that Google button all the time! All the best!